Changing Outcomes through Partnership: Epilepsy Foundation and the National Association of Epilepsy Centers (NAEC)

 

Dr. Nathan Fountain is the previous president of the National Association of Epilepsy Centers (NAEC), a trade organization representing over 240 epilepsy centers in the United States. In 2019, we asked Dr. Fountain to reflect on what the NAEC does and what excites him the most about their partnership with the Epilepsy Foundation for our 2019 December Research Quarterly. Dr. Susan T. Herman is the president of NAEC as of January 2020. 

About the National Association of Epilepsy Centers

The National Association of Epilepsy Centers (NAEC) was founded by Dr. Robert Gumnit in 1987. The mission of the NAEC is to support epilepsy centers in delivering quality comprehensive care to people with epilepsy, by setting standards of care, advocating for access to high-quality epilepsy center services, and providing knowledge and resources to its member centers.

Through Dr. Gumnit’s leadership, the NAEC led the conversation about what services should be required at an epilepsy center. In 2016, the NAEC began an accreditation process to ensure that epilepsy centers had the services needed for quality care.

Four Levels of Epilepsy Care

• First‐level care is provided by the primary care physician.
• Second‐level care is provided by a general neurologist. Most people with epilepsy are adequately treated at this level.
• However, if you are still living with uncontrolled seizures or side effects after trying at least two medications, then you should be referred to a third or fourth‐level specialty epilepsy center for follow-up.
  • Looking for an epilepsy center? Visit the NAEC website.

NAEC Strategic Priorities

1. Standard Setting: Ensuring that epilepsy centers are providing the highest quality care
2. Advocacy: Minimizing the financial and regulatory barriers to providing quality care
3. Member Center Support: Providing comprehensive resources and administration oversight to epilepsy centers

As a professional trade organization representing epilepsy centers, the NAEC wants to ensure that our epilepsy centers are providing what our community wants. That is why the NAEC finds partnerships with organizations like the Epilepsy Foundation invaluable. Both organizations want to ensure that those living with epilepsy are getting the best support they can get. Historically, NAEC has worked with the Epilepsy Foundation on initiatives to improve the quality of epilepsy care in the United States.

Partnership with the Epilepsy Foundation

In 2018, the Epilepsy Foundation was awarded a PCORNet Learning Health System Network Pilot Collaborative grant to establish an Epilepsy Learning Healthcare System (ELHS). ELHS is designed to gather data about people with epilepsy from clinics around the country and analyze it centrally to identify practices that lead to better outcomes. When the Epilepsy Foundation& came to NAEC for support, we jumped at the opportunity to participate. The NAEC Vice President, Dr. Sue Herman, has been instrumental in building up the ELHS and serves as a clinical core lead for the network.

In the past year, twelve pioneering epilepsy centers across the country have joined and are testing out the pilot data infrastructure. At each clinical site, there is a local Epilepsy Foundation organization as well as rare epilepsy organizations working with the hospital to ensure that there is a seamless integration of resources.

One of the ELHS’ greatest assets is the partnership between clinicians and people with epilepsy so that the clinicians know what matters to people with epilepsy. The Foundation’s commitment to leading this effort is to be commended. The ELHS is an amazing opportunity for us to transform healthcare for epilepsy and NAEC is thrilled to be a partner in the effort.